'Shadow and Light,' 'Blackberry Winter' explore the consequences of Alzheimer’s Disease through music and theater

Most of us will eventually know a family member, friend, acquaintance, or colleague who, as a vibrant individual today, will be slowly transformed by the onset of dementia or Alzheimer’s disease. Their subtle slide into the shadows is difficult to first recognize and then accept. But as the loss of mental capacity becomes more pronounced, the lives of those affected, the families and friends who care about them are changed forever.

The arts have long provided a way of exploring the emotional consequences of mental illnesses like Alzheimer’s. Themes of anxiety, schizophrenia, melancholy, depression and other disorders have appeared in paintings and sculpture, on stage, or in music.

This month, Eugene Concert Choir’s select chamber ensemble, Eugene Vocal Arts and Oregon Contemporary Theatre offer two new productions about people with Alzheimer’s disease and their caregivers. On Saturday, April 2, an introductory symposium co-hosted by the two arts organizations initiates a month of music and drama.

Shadow and Light

Oregon composer Joan Szymko’s Shadow and Lightgives voice to those affected by Alzheimer’s disease and other forms of dementia. For the composer, it has been an often emotional journey exploring the lives of families, caregivers and patients and telling their stories through music.

Composing a major work that explores a subject as sensitive as Alzheimer’s began in August 2014 with “a 6-7 month period of research that involved reading a LOT of books, both about the personal experience of Alzheimer’s and dementia, the science of Alzheimer’s, and poetry,” Szymko told ArtsWatch via email. As she read about those affected by Alzheimer’s disease and other forms of dementia, she highlighted pages and passages with post-it notes, marking passages that intrigued and inspired her, and found poems that spoke to her growing understanding of the realities of dementia and from which the music would eventually spring.

Portland composer Joan Szymko. Photo: Jake Wehrman Video.

In April 2015, Szymko met with families, caregivers and patients affected by Alzheimer’s to learn more about “challenges, frustrations, hopes, determination, acceptance, and moments of light and tenderness. One event in particular really helped her understand what she was going to say with this piece of music. She attended a rehearsal of the Sing Here Now choir for persons with early-stage Alzheimer’s and their caregivers with Dawn Iwamasa, formerly the Early Stage Program Director of the Alzheimer’s Association Oregon Chapter, a strong supporter of the Remembrance project who was integral in connecting musicians with people affected by Alzheimer’s. “I asked them what it was that they most wanted people to know,” Szymko recalls. “It was quite simple— they wanted to be seen and their voices heard. As one woman stated, ‘there are no poster celebrities for Alzheimer’s like there is for cancer – no Angelina Jolie. There are no survivors.’”

Szymko “thought a lot about how to use the orchestral colors to portray what Alzheimer’s dementia might sound like,” she explains. “I considered the fact that there is no ‘one’ Alzheimer’s story. Even though Alzheimer’s progresses through the brain in a predictable path, each person’s brain compensates for the changes to their brain in different ways. And while there are many, many common experiences among those who care for loved ones with dementia— there is certainly not ‘one’ caregiver story.”

The libretto is a collection of poems and texts from various sources, including scripture, contemporary poets, the composer’s own writing, and poems by caregivers. Although she focuses on telling the story through music, some texts, spoken both on and off the stage “are an amalgam of both conversations I had and books and stories I read,” she says.

Alzheimer’s is a tragedy, but it became clear to Szymko that the story she would tell would not be a horror story – but one “that held those with Alzheimer’s in the light of dignity and that looked upon caregivers with compassion.”

She divided Shadow and Light into three sections, the first told from the perspective of a person diagnosed with dementia, the second from the perspective of the loved one/caregiver, and a third inspired by books written by people with Alzheimer’s and by those with caregiving experience. This “I and Thou” section (a phrase coined by Martin Buber) maintains that “the person with Alzheimer’s has not ‘disappeared’ — is not ‘the disease’ — but a person still capable of feeling love and beauty (and music!) and still capable of connection,” Szymko wrote.

Onstage, three soloists (soprano Sarah Joanne Davis, mezzo soprano Marietta Simpson, tenor Brendan Tuohy) “assume the characters of the afflicted, family member or caregiver, expressing the unique perspective of each on this heart-wrenching journey.”

Szymko’s piece was commissioned by the driving force behind the Remembrance project, EVA artistic director and conductor Diane Retallack, who had lost her mother and grandmother to Alzheimer’s and wanted to create a musical work to give voice to those affected by the disease. The Fred W. Fields Fund Creative Heights Initiative of the Oregon Community Foundation and the Oregon Cultural Trust provided support for the commission.

Blackberry Winter

“Blackberry winter” is a colloquial expression used in the American south and midwest that refers to a late spring cold snap when the blackberries are in bloom. Oregon Contemporary Theatre’s April 15 – May 7 production of Steve Yockey’s new play Blackberry Winter, a dark multilayered comedy/drama, explores what happens when someone begins to forget the story of a life shared with another person.

Playwright Steve Yokey. Photo: Steve Yokey

Vivienne Avery, who has enjoyed a middle class life of success and comfort, is in no way prepared to deal with the news of her mother’s Alzheimer’s diagnosis. Terrified of the future, not only for her mother but for herself as well, she experiences a flood of emotional experiences including anxiety, fear, anger, sadness, disbelief and understanding, common to those who become caregivers.

Like a cold snap in spring, her mother’s illness set Vivienne on a journey toward an uncertain future and her realization that it is less about her mother’s and more about unconditional love and moving forward as one shared memory after another is forgotten. “It is about what’s left,” Vivienne says near the end of the play. “It has to be about what is left.”

Gary Ferrington is a Senior Instructor Emeritus, Instructional Systems Technology, College of Education, University of Oregon. He is an advocate for new music and serves as project coordinator for Oregon ComposersWatch